We are pleased to share the latest edition of our quarterly newsletter:
The Glut1 Deficiency Foundation Receives Eugene Washington PCORI Engagement Award for Adult Experiences in Glut1 Deficiency Project
The Glut1 Deficiency Foundation has been approved for a $49,265.00 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the Adult Experiences in Glut1 Deficiency Project.
Glenna Steele, Executive Director, will lead the engagement project at the Glut1 Deficiency Foundation. Glut1 Deficiency is a rarely diagnosed genetic condition where glucose doesn’t reach and fuel the brain properly, resulting in seizures, movement disorders, developmental delays, and a wide range of other neurological symptoms. There’s an overall lack of awareness and education in general for G1D, but it’s especially true for adult patients, which translates to a lack of information about symptoms, treatment options, and available services and supports to help patients better manage their condition and have a better quality of life.
The Adult Experiences in Glut1 Deficiency project aims to help address this lack of knowledge by conducting the first ever large scale survey of adult patients in collaboration with Dr. Mackenzie Cervenka at Johns Hopkins Hospital. The information gathered will be used to foster discussions, share experiences, and build resources to better address patient needs and lead to better care. Special sessions for adult patients will be held for the first time during the next biennial family and professional conference, which will serve as a platform for the objectives of the project. It will take place at Hilton Crystal City in Arlington, Virginia on July 11-12, 2019.
Patient engagement has been the impetus for the project through feedback, sharing of experiences, and asking questions that seem to have no answers. The Adult Experiences in Glut1 Deficiency project seeks to help fill these gaps through deepening and expanding stakeholder engagement across a variety of channels.
“The Glut1 Deficiency Foundation is honored and excited to have been chosen for this prestigious award,” shared Project Lead Glenna Steele. “We hope and expect that many good things will come from these efforts and activities and that this project will serve to improve the lives of our adult patients of today - and all those who will one day follow after.”
The Adult Experiences in Glut1 Deficiency project is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.
According to Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer, “This conference was selected for Engagement Award funding because it will bring together patients and other stakeholders to explore critical issues related to CER and communicate PCORI-funded research findings to key stakeholders. We look forward to working with the Glut1 Deficiency Foundation throughout the course of their year long project.”
The Glut1 Deficiency Foundation’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit PCORI's website.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
The Glut1 Deficiency Foundation is a nonprofit family organization dedicated to improving the lives of those in the G1D community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.
Please visit the Glut1 Deficiency Foundation's website to find more information about the Adult Experiences in Glut1 Deficiency project and conference planning details.
We are pleased to share our summer newsletter with some of the highlights below:
October 20th with be Help Some1 with Glut1 Day! Find out how you can join the York family from wherever you live and take part to help the Glut1 Deficiency Foundation bring help and hope to the Glut1 community! Click the link below for more details!
Please find our spring edition newlsetter at the link below. It has been a busy time for the Glut1 Deficiency Foundation and we have lots of information to pass along!